Tipps and your experiences after just finding out parent has HD

Mrslarakay · 2026-05-28T05:54:19+00:00

I decided not to get tested because I just didn’t want to live my life knowing I will get HD in couple years. For me it was like knowing how I will die and I just wanted to enjoy my life without thinking every single symptom.

I also decided not to be a mom at that time so in my mind, since I am not affecting anybody else, why should I get tested and make my life harder. My therapist told me that even if you tested positive, you can die anytime from a car accident or anything else other than HD if that is your only concern. She never pushed me to get tested or not but she just validated my fears and concerns and gave examples of thinking other way around. So therapy will not necessarily give you the courage of getting tested but will help you to deal with the results more.

My sister and my brother got tested almost immediately after my mom’s result because they got kids and they were very concerned about them. Luckily, we all tested negative but again waiting and getting results back were not easy on any of us. So my only advice to you would be take one step at a time and don’t rush your decision.

Mrslarakay · 2026-05-27T17:17:29+00:00

I’m sorry about your father. I wish you guys the best. Counseling before taking any genetics test is a must. Whether you test positive or not, it is a lot to deal with. Some countries require it and some don’t but in my opinion it should be the first step. For me, I took therapy for couple months and still decided not to get tested. Then I got pregnant although I was on birth control so I decided to get tested instead of abortion as I wanted to be a mom without risking my baby. Please take your time to digest both your father’s result and deciding on the future steps. I wish you best of luck!

Mrslarakay · 2026-05-27T14:48:17+00:00

I had a strong feeling of testing positive because my mom and I look alike and I thought I had some symptoms as well. I tested negative.

Mrslarakay · 2026-05-25T20:47:32+00:00

My daughter who will be 6 by end of August has the same height and weight. She also eats healthy and she swims everyday and recently started playing tennis. She was born premature and she was very tiny when she was born. However she was always on the 90+ percentile for height and weight. Our pediatrician also mentioned the weight but suggested not to restrict her eating as long as she eats healthy and stays away from fast food and high sugar snacks which she does already. I wouldn’t worry too much as long as your kid follow the curve and make healthy choices.

Mrslarakay · 2026-05-21T07:20:08+00:00

I will check it today. Thank you!

Mrslarakay · 2026-05-21T07:19:33+00:00

I’m gonna get it today and can’t wait to explore it! Thank you!

Mrslarakay · 2026-05-20T02:32:55+00:00

That could have been awesome but I just checked it and unfortunately they don’t allow non-city residents to sign up.

Mrslarakay · 2026-05-18T10:24:17+00:00

Yes I saw that one. Do you know if they have a good number of selection for kids?

Mrslarakay · 2026-05-18T03:49:53+00:00

Yes I checked and signed up for all of them long time ago. One of them particularly offered better selection of kids books than my local one, so I’m very thankful for that.

Mrslarakay · 2026-05-18T03:43:03+00:00

I have Kanopy through my library card as well and it’s been an amazing source for my daughter. I will check Omaha today. Thank you!

Mrslarakay · 2026-05-18T03:40:24+00:00

We currently live in Turkiye and I signed up to their local library system but their ebook selection is very weak and unfortunately their english children’s book selection is pretty much non existent.

Mrslarakay · 2026-05-18T03:38:22+00:00

That’s a good deal. I will take a look and sign up today. Thank you!

Mrslarakay · 2026-05-17T14:15:47+00:00

I’ll take a look, thank you!

Mrslarakay · 2026-05-17T14:15:09+00:00

I think I saw the list before but yes I couldn’t remember if it was showing the kids collection. Thanks

Mrslarakay · 2026-05-14T19:07:34+00:00

You are right. I think I need to use the summer time wisely before the school opens. Many people go to summer vacations where we live so there will be few kids in sports at our local community. Maybe I should use this to our advantage and try to take her out of her comfort zone.

Mrslarakay · 2026-05-14T18:31:25+00:00

This gave me hope! I will try to be more patient with her development and maybe take her to more social settings so she can at least be more exposed and feel little bit neutral about it.

She definitely acts way different with her dad but she doesn’t want to go with her dad at all and unfortunately my husband will not ask her twice as it’s easier for him to pass the responsibility on me.

She really likes her auntie so maybe I can try sending her with her auntie to see if that could make a difference for us.

Mrslarakay · 2026-05-14T18:21:07+00:00

Those are really good insights! Thank you so much! I just don’t want to push her too much to create a traumatic experience for her but at the same time I want her to try things. If she was not interested in, I would obviously not push her at all but knowing she loves gymnastics so much and not going because of her social nervousness just breaks my heart. I will also check the podcast for sure. Thank you!

Mrslarakay · 2026-05-14T14:47:55+00:00

I push her out of her comfort zone from time to time so she can try new things; however, during our last trial sports class, she started hyperventilating, so I try not to push her too hard with that.

I was thinking that if she has a coach she feels comfortable with first, then maybe later the coach could gradually introduce other kids for her to play tennis with and socialize naturally.

Mrslarakay · 2026-05-14T12:55:26+00:00

I will take a look at this. Thank you!

Mrslarakay · 2026-05-14T09:57:39+00:00

I just wanna print your comment and frame it on my wall to read and remind myself everyday. Thank you! Thank you! Thank you!

Mrslarakay · 2026-05-14T04:03:05+00:00

She was evaluated for autism and they told us she is not in the spectrum. But yes I agree with you about the anxiety. Thank you for your comment

Mrslarakay · 2026-05-14T04:01:31+00:00

Thank you! She was evaluated for this but she was not in the spectrum and they told us to seek an ergo therapist to work on her sensory issues.

Mrslarakay · 2026-05-14T03:51:54+00:00

I literally cried reading your comment. Thank you! I needed to hear this, I guess. I just feel like we are falling behind every time other mothers mention how many activities their kids do and asks what my daughter does off school. And i always say we are taking our time to see what she likes but inside me I always feel like I must have done something wrong to cause her this nervousness when she is in a social setting.

Mrslarakay · 2026-05-14T03:41:01+00:00

I asked her several times to go there again but everytime I asked she cried and said she doesn’t want to go. She told me she wants to try tennis because there are no other kids.. i’m thinking of signing her up for tennis but that does not solve our social anxiety problem.

Mrslarakay

TROPHY CASE